1 in 5 shows PTSD symptoms after cancer diagnosis, study finds

Roughly 1 in 5 cancer patients developed post-traumatic stress disorder within six months of their diagnosis — and a small percentage still experienced trauma-related symptoms six years later, according to new research.

Cancer patients and psychologists have long known a cancer diagnosis can lead to post-traumatic stress disorder, even when patients manage to drive their disease into remission.

A new study, published Monday in the journal Cancer, underlined the pervasiveness — and in some cases, the persistence — of that emotional trauma.

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Scientists in Malaysia and Boston analyzed 245 patients over four years, and found that nearly 22 percent had developed PTSD within six months of their diagnosis. Four years later, more than 6 percent still experienced symptoms like psychological distress and cognitive problems.

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Such problems can undermine a person’s recovery, because those with PTSD are less likely to show up for appointments or stay with treatment, among other things.

“This underscores the importance of building better programs for longer-term support for cancer patients, said Dr. Fremonta Meyer, a psychiatrist at the Dana-Farber Cancer Institute and co-author of the study. Otherwise, she said, “we’ll miss people who are really continuing to suffer emotionally.”

The study’s authors point out that one potentially significant limitation is that they examined only patients in Kuala Lumpur. Dr. Gary H. Lyman, co-director of the Hutchinson Institute for Cancer Outcomes Research, who was not involved with the study, said cultural differences could play a role in how patient emotionally respond to a cancer diagnosis. “But I wouldn’t be willing to dismiss this as something that may not apply to other settings, including other racial, ethnic, and social settings in the U.S.”

“I think this is a solid study, and one that’s going to get a fair amount of attention,” Lyman added.

Dr. Alan Valentine, chairman of the department of psychiatry at the University of Texas MD Anderson Cancer Center, in Houston, and who was also not involved in the study, said he was not surprised by the results.

“Do we do as well as we should in following up on anxiety and depression? Probably not,” he said. He said he would like to see the study replicated and the results compared with the number of cancer patients who are being tracked for long-term PTSD. “We’re probably missing a bunch of people.”

Lyman agreed. “We have just presumed that once the patient passes that acute phase, which may go for six months on average, that their symptoms will abate,” he said. “So we stop asking the question.”

Meyer said the research was unusual in that it analyzed a more heterogeneous patient population than other studies. “A lot of others have looked only at a few cancer types — like breast cancer, which tends to have more support services,” she said. “Ours enabled us to capture a wide variety of cancer types, including rare cancers, and those where there isn’t as much social acceptance and support.”

“In terms of the consequences of this – and how it might affect one’s cancer treatment, one of the cardinal symptoms of PTSD is avoidance,” she added. “Patients who are experiencing PTSD may actually avoid having scans, going to oncology appointments, things that might remind them of the traumatic experience they had.”

Dan Duffy, a St. Louis-based video producer, who was diagnosed with stage 3 testicular cancer in 2002, said that after what seemed to be a successful initial treatment, his oncologist had him undergo a scan that also involved a painful catheterization. When the results were inconclusive, he said the doctor asked to repeat the procedure.

Duffy said he initially refused. “One of most insidious things about cancer is when you realize treatment is working and you’re not going to die, but the treatment is so overwhelming that you don’t care if you do,” he said. “It happens to a lot of people. It happened to me.”

How much did his oncologist evaluate and treat Duffy’s emotional trauma?

“Oh, zero,” he said. “And my doc had a great bedside manner. I loved him.”

I’ve had cancer twice. The first time in 1987 and the second time in 2010 – when I was able to join Gilda’s Club, part of the cancer support community. It was at Gilda’s that I was finally able to resolve some emotional aspects from 1987. But I still have a physical reaction when I talk about chemo. (1987 was before there were good anti-nausea drugs). My throat tightens up and I start to tear. Which is why I declined to go through chemo the second time, regardless of any assurances that I wouldn’t suffer like I did the first time. Death was not as frightening as going through that again.

It’s hard to go to yoga classes and support groups and be mindful and thankful and reach out to others and, you know, just “take a breath” while sipping herbal tea when you feel about 1 million kinds of bad. I need the freedom to just feel bad. Because this is terrible. I have TSD…there’s no P in it.

Ah Windy,
Going through that feeling bad is part of recovery. I hope you can find some people who have the ability to deal with that. There’s no reason anyone should not feel angry, sad, disoriented or a host of other negative emotions when cancer comes knocking at the door.
I’ve been reading more writing about the pressure cancer patients feel to be chirpy and brave. You are not alone.

I agree Ducklady.
Also, mindfulness is about acknowledging the “feeling bad,” without constantly proliferating thoughts, becoming overwhelmed by emotions, or assuming that such feelings shouldn’t be there. Such an open approach with acceptance gradually allows one to let go difficult thoughts and find peace within oneself.

Windy,
That’s very difficult, as you’ve no doubt noticed. I have a close friend whose partner will not recover. She finds the pressure to be “positive” very stressful. People don’t understand that the day he stops chemo will be a bad one for them, not a victory. The denial is pretty strong. I’m sorry you are facing this.

Doctors are quick to go to worst possible scenario when discussing options with patients, not realizing that patients need time to process the diagnosis before rushing into staging the cancer. I was not offered help in psychologically processing my diagnosis and it has not been easy.

Very fortunate to have a cancer diagnosis and treatment with quick remission. I did recognize the emotional toll and took myself for counseling. Many individuals need support and direction during and after treatment for life threatening illness.

I have a close friend who had breast cancer about 15 years ago. As I’ve gotten to know her it’s become clear she has classic PTSD symptoms. I recognized the symptoms from my own work with survivors of other kinds of trauma. She’s receiving treatment of it now, but prior to my bringing it up no one had ever mentioned it to her, nor had she ever read anything about a connection between cancer and PTSD.

Feeling bad is NOT part of recovery. When you have to always rest after taking a shower cause it takes so much out of you, that’s not recovery. That’s just feeling bad physically. When you’re conscious 24/7 of not feeling well, that’s not recovery. Again, it’s feeling bad – both physically and emotionally.